Fundraiser Link

I want to thank my incredible friends, especially Yael Dahan Marmar, for putting together this amazing fundraiser for me: MONAPALOOZA on Thursday, May 12th at 111 Minna in San Francisco 5-9:30 pm. Thank you and hope to see you there. Part of proceeds will go to CA Lyme Disease Association as well. EVENT LINK: http://www.brownpapertickets.com/event/166958

It's been a while since I have updated the blog; it's been down again then up a little, bit of a rollercoaster...more soon.

Some inspiration quickies

These words have so much meaning in my life now...even if they don't have meaning in yours, read them and hold them in a place in your heart as maybe one day they will have meaning when you least expect it.

"Misfortune can force you into doing things you should be doing anyway. Lessons come from adversity. Anything can happen to anyone...You can find a new lease on life - more meaning than you thought possible in simple things... Let go. Live in the moment. Go forward." ~Christopher Reeve.

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise. When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."

Option #3: sob hysterically on the floor, hide under your bed, break a table in anger at the word, lock yourself to oh say..6 seasons straight of The OC or Gossip Girl via Netflix and ignore everyone near you and only have excitement for the trashy tv show that is at that point the only thing that is getting you out of bed in the morning. When it's that bad, and oh I've been there for many years off and on, just keep on keepin' on. Keep going. There is a light, I PROMISE. I didn't believe it many times, but then that was all I had to hold onto - BELIEVING.

I was in that stage for at least 6 months last year, and I am out of it now! There is nothing wrong with being in that place - we are all human and need to express anger, sadness, crushing hopelessness, sense of loss, and numb ourselves to the magnificent pain life can sometimes deliver with the soothing narcotic of mindless television. Better to engulf ourselves in others' torrid lives than face the reality of our own....TEMPORARILY, of course. When it's that bad, give yourself permission to feel it. We cannot be Polyanna every second of the day. I remember a certain someone telling me if I just looked at everything with a better outlook, I would probably be much healthier. Easier said than done, especially when you feel like you are dying and 33 and living with your parents attached to an IV pole and hopelessness like it's a drug. I wanted to throw cheese at his face. But I did not. Instead, I went downstairs, curled up in my leopard-print snuggie, put in 4 hours of "The O.C." and projected my sadness into Marissa Cooper's identity. Yes, sometimes I thought I was her, the broken, sad, young girl. I finished the O.C. and now I'm back in San Francisco and happy and on my way to better health every day....

Honor yourself and where you are, and you will BLOOM.

~Your friendly butterfly-in-the-making, Mona

I hate Blue Shield!!!!!!!!!!!!!!!

Alright, it's 2 am, I am fucking exhausted and I fucking hate Blue Shield of California (and every other insurance company for solidarity sake for my other Lyme friends' battles with them). There I said it!!

I was trying to be all zen like (well, sometimes) for the last oh, 3 years, fighting tooth and nail with health insurance companies (utilizing all my energy and strength) to hold them accountable for paying my hundreds of thousands of dollars of medical bills, fighting with long term disability insurance companies trying to get them to pay me what I paid into the system, now fighting with state disability agencies...I mean does it ever fucking end!????? I thought it had come to an end when CBS kindly decided to expose Blue Shield in November in a newspiece on me. But I am still hemorrhaging money. For what? MEDICAL TREATMENT THAT IS GETTING ME BETTER THAT I AM LEGALLY AND MORALLY ENTITLED TO!!

I just unloaded about 82 separate legal files today handling different aspects of JUST my medical care, health insurance, disability, etc. I am lucky to be equipped a J.D. and to have numerous lawyer friends to help me with my numerous legal questions, and even had CBS do a piece on me and STILL, I am fighting these A$%HOLES tooth and nail til the wee hours of the morning because I refuse to lay down while they try to stick their bullshit "American health insurance screws over every sick patient in America" on me. I SHOULD be in bed. I SHOULD be resting. I SHOULD be drinking water and taking my vitamins and supplements and eating healthy. I usually do, but fighting these people has become so intense I cannot even do that. I just sit here exhausted and yet POSSESSED to fight these people.

I just finished a 2 hour IV infusion after going trying to organize these 82 medical files today and having a near mental breakdown. I am now far past mental and physical exhaustion. I need to get someone to help me; I cannot fucking organize these piles alone. It's 2 am. I need to be asleep.

After Blue Shield apparently came to an 'agreement' with the state agency that investigated them (the Department of Managed Health Care), I am now told by Blue Shield that NONE of my IV meds (at $3-4K per month) are covered after December 24, 2010 (they only covered the meds for about 40 days). The reimbursement they provided for previous payments I made out of pocket were COMPLETELY inadequate: one example was $17 paid to me for a $2,000 claim - that was for 4 days of IV supplies and meds. This, even though they led me astray me for 8 months in my attempt to find a participating provider to supply my meds. It's almost 1 YEAR to the date that I got my picc line in and this bullshit still isn't settled.

And I am now to the point where I am at least able to handle (well that's questionable) calling these people and opening the 5-10 letters and EOBs (explanation of benefits) per DAY I get from Blue Fucking Shield. I just got another one from a "Senior Regulatory Coordinator" with factual inaccuracies. I've written a legal letter numerous times by mail, email, and fax and sent it every Tom, Dick, and Jane at Blue Shield and every state agency outlining STEP by STEP the timeline of events from March 2010 until present and they STILL can't fucking get it right!??!?!

Sorry to you f-bomb haters who think I am a moral degenerate for swearing so much but I'd like to see normal people deal with this disease, the controversy, the frickin' catheter that lives up inside your heart for almost a year, and THEN deal with 72 legal files of medical bullshit (and this is only 1 of my bins; I have more!). This is ridiculous. REDUNKULOUS. I am fed up. F-bombs are warranted and if you I am trying to move on with my life, trying to don't believe it, read this report that says swearing eases pain: "Why Swearing Helps Ease Pain," http://www.time.com/time/health/article/0,8599,1910691,00.html. Thank you, TIME Magazine, for making it ok for me to fucking swear!! It feels so much better! I'd rather be resting and getting better so I can start working EVENTUALLY but Blue Shield and the government and another unnamed long term disability insurer seem to want to thwart my efforts to return as 150% Mona. Well guess what, assholes!??? I won't let it happen!!!

Yes I am going to stay up past my bedtime when I should be sleeping and fight you bastards with all my might. And you are coming down. I'm not giving up. I'm getting my $100,000 or $200,000 back and I'm going to get it back for a whole bunch of other chronically ill patients in the future.

Ironically, I came across this organization called "Insure the Uninsured" here in California, and found a lawyer working on their policy in Sacramento...though I said I didn't want to be involved in health care reform and policy and law, I am finding I know way too much about it and might gravitate towards that path when I can work again.

For now, I think I have the right to vent for myself and for all those others who are too fucking tired to vent and are properly in bed sleeping at 2 am for oh the 300th day in the last 2 years! This is for you, Lyme masses, and anyone else fighting any other illness and bogus health insurance company whose sole job is to pad their CEO's shoes with solid gold and shit on sick people.

Scene from 40-year Old Virgin above where Steve Carell's character swears profusely to diminish the severe pain experienced by waxing his entire body.

That's what health insurance companies are, a bunch of evil back waxers. Well if I were a male, they would be a bunch of evil painful body waxers. I am making no sense and exhausted. I wish I could just say, I've done my best and go to bed. But I can't. I have to keep going. Evil waxers. I may have to delete this post in the morning after I read it while coherent and undrugged.

RAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAWWWWWWWR!

The Obligatory New Year's Post

First, Happy New Year. Second, since this is my first blog, I think a New Year's post is quite expected. I was planning on skipping it altogether. For though most Lyme patients' New Year posts can be found recapping the difficulties of the disease while simultaneously uncovering the small gifts we have been given through this journey, I was not ready to go there. Until now (a couple weeks after Jan 1).

Since I have been sick off and on since late 2005, and was diagnosed with Lyme in 2008, I'm kind of over hearing "this is your year, Mona. I can feel it." Yeah, I felt it at the end of 2008, 4 months into treatment. Nope...didn't feel anything at the end of 2008, oh other than the bitter cold pile of snow stuck against my back while lying flat in the snow in my parents' backyard at 3 am crying hysterically waiting for my parents to come home from a New Year's Eve party. Now that New Year's I will never forget. Those were some dark times.

2009 would be my year of FULL recovery! Oh but then December 2009 rolled around and I was back in Michigan AGAIN, though this time I had my 3rd date with my to-be-boyfriend. It was wonderful to get dressed up and go to a nice dinner but I was so ill that day I barely made it to the date in one piece, though of course I did a marvelous job hiding this. I almost vomited the fancy lamb dinner he bought me. And I had vertigo the entire night. But, I made it through without throwing up on my date or severely embarrassing myself, and at least I was not alone in my parents' yard in the snow crying! I was happy...So yes, then I heard again from my friends, "2010 is going to be your year, Mona. I know it!"

Well 2010 just passed. I will say I have come a loooong way from the girl in the snowpants in the backyard, but I wasn't 100% healthy. December 31, 2010 was just a few weeks ago and I'm still not working, exercising, or 100% Mona again. Of course I've made great progress, with PAINFUL ups and downs, plaguing me like a never-ending rollercoaster. You'd think the rollercoaster would get easier, sometimes it does, sometimes you're knocked out for 2 weeks and think your going to just wither away and die. But then you get back up again, and boom, you resume some sense of who you were before you dipped down that steep hill on the Matterhorn (you know the rollercoaster).

So now you can see why I was hesitant to say "Happy New Year, this is my year, I know it!" but you know what, I DO know it. I didn't know it January 1st but I KNOW it now, January 11, 2011. So it's my year. I feel it so strongly like I've never felt anything before. I think the word they use to describe that is HOPE or PERSEVERANCE. Together, it makes for a wonderful start to 2011.

And I can snowboard next year! Dr. G (my Lyme specialist) told me this. I had a 1 hour monthly check up with her and after our session, I ran back to knock on her office door, interrupting her sacred lunch time, and asked flat out, "Do you think I'll be able to snowboard in a year?" She answered "Yes, not this year, but next year."

"WHAT!??? Really!!??" I was so excited I couldnt stop smiling.

A sidenote: Dr. G almost NEVER gives a categorical answer - YES or NO - when you ask questions like this. When will I be able to stop treatment? When will I be better? When will I be able to go back to work? There is NEVER a definitive answer to this because there is no way of knowing; every patient is SO different. However, I usually ask, "is it possibly I can go back to working part-time in 6-9 months?" that kind of thing, and she can say, "yes it's likely." Never has she ever said flat out YES to ANY of my questions of what I could do.

(Had someone told me with certainty back in 2007 when I was mysteriously ill (before my Lyme diagnosis) that it would take FIVE years for me to be able to exercise and SNOWBOARD again (or mountain bike, surf, or rock climb for that matter), I'm pretty sure I would have run to Golden Gate Bridge and tried to jump off. The outdoors/sports is my life. But when hope keeps carrying you from year to year, 4 years have gone by and I'm still here...)

So this gave me great hope. In the end, it doesn't matter what ANYONE tells you - your doctor, your family, your friends, your healers, your acupuncturists, it only matters what YOU tell YOURSELF. And as I have learned to reweave my story and truly BELIEVE in getting better, and not characterize my identity as a "Lyme patient" though I sometimes refer to that term as I did above, I am NOT a Lyme patient. And what my friends and family and healers have taught me is that I AM not this disease. YES, I will advocate for late-stage Lyme patients forever. YES, I will educate others about it and be vigilant about it so they can prevent it. YES, I will use my law degree in a major way to advocate for adequate treatment of this disease, insurance coverage, and disability coverage. YES, I will be testifying before medical boards and Congress until things change. YES, I will take pro bono cases for sick Lyme patients (or other chronically ill people) who cannot afford legal counsel. BUT, that does NOT make me the POSTER child for the disease.

Identifying myself as the poster child for late-stage Lyme makes me feel more sick. And I find myself more and more not thinking of myself as a Lyme patient, but as MONA, real MONA, who happens to be dealing with Lyme. And that mindset (which believe me is MUCH easier to accomplish when you are feeling well and not like death) has propelled me, I believe, to new heights of health and happiness. I feel so free, amazing, I am FINALLY living on my own for the first time in 15 months... More on this in the next post...

But for now, I feel awakened, alive, blessed, as my friend Yael (and Bryan) said, "You will look back on this whole experience as a complete gift." Of course I will. I can do that already (on many days, not all)!! A blessing in disguise...as the blog is aptly named about my metamorphosis, literally. The disease was just the vehicle in which my mind, body, and soul would transform...slowly into that butterfly I keep dreaming of.